Monday, June 26, 2006

I'm a bit overwhelmed with the detail of Q's medical stuff. Shocking, I know.

I think I may have hit a wall here. I have the initial vision therapy appointment set for Tuesday morning, for which I must obtain chart notes from the pediatric ophthalmologist by the time of the appointment. I must still get appointments set up for urology and genetics, both at a particular pediatric facility some distance away.

I don't want to. Yes, I am stomping my feet. I don't want to set up any more appointments, eat breakfast en route to _________ appointment, haul the kids to any more doctors' offices (counseling is enough on it's own), orchestrating food/gas/patience as the day drags on... I've had it.

I have a spiffy binder which holds Q's medical history and chart notes and essentially, my life, which is so helpful. Also, it is a huge, heavy, sharp-edged pain to haul around. I hate it.

I'm good at all of this, most especially keeping everyone on track, fed and happy during these trips. It's not that I can't do it, or that the kids are awful. They're not. They're great, and fun to boot most of the time (which is more than can be said for me lately). I just hate the whole process. I hate that I have to be good at this. I'd far prefer to apply my talents to something else besides correcting for my infant's brain malformation.

I haven't had much choice in my life over the last several months. I don't suppose many of us really do. Once a person subscribes to a particular code of ethics or set of beliefs, the choice part is largely done, as far as figuring out certain details. We usually get some say in where and how we live, what our investments of time and energy will be, how we respond in crisis. I guess that once I had G, that part was no longer up for discussion. Many of the things I've done/lived are not remotely what I thought I'd be doing/living, and it's almost entirely because I am somebody's mother. Several somebodies, but you get my point. I am richer and blessed and so much more than I ever thought I would be in soooo many ways because of my kiddoes. I am amazed every day at how much they change in me and require of me, in the best sense, of course. I am grateful to be their mom and that I am allowed to be along for the experiences which constitute their little lives.

But just now, even though I am so perpetually awed at all they are, as well as who I am because of them, I wish I'd never met their father. I wish I never had to see or speak to or deal with or think about him ever again. I do not wish him ill. I think he has enough of that waiting for him, karma being what it is. (I love physics, don't you? What a magnificent thing, to live in a universe so created...) I just wish I could skip the rest of the fresh versions of hell that seem to be a requirement for this sort of utter nonsense.

The bottom line for me has been, for years now, to always do the best one can in the moment with whatever one is facing right now. It is impossible to predict the future, except to say that by the end of one's life, it is likely that the meaning of the Chinese curse: May you live in interesting times, will have become painfully, personally clear. It is vitally important that one does one's best with those things over which one might actually have some control, because the rest of it, the things which are "interesting," the things which comprise our existence and which we take so for granted, are not in our power to control. Believing this does not mean that I have always done my best, far, far from it. It does mean that when I'm ill and feeling like falling on my face I push myself just a little farther because there's a good chance that things will get worse (the kids will be puking too) before things get better. It also means that I try to always say please and thank you and apologize and mean it, mean all of those niceties, and place genuine, abiding, verbalized value on another's efforts on my behalf, whatever the circumstances.

Which brings us back to the beginning of my tirade.

I will do the best I can for Q, of course. And for his sibs. No matter how the details get to me. It's just that I can't seem to get past the fact that the other half of this team is gone (heck, I'm beginning to think he may never have actually existed). That may not seem to have much to do with Q's issues at first glance, but look again. Most families who face significant health issues with a child hang together, in part because they are perpetually, starkly reminded of what really matters. Because of that, those families reap myriad benefits. The other children are often kinder, generally more patient because they have first hand experience with "the least of these"and the example of their family structure stretches the expectations of character for each family member. The parents know that they would give anything to make it better/normal for this child, and that their petty wants take a backseat to the larger goals, usually to the benefit of all, especially themselves. Self-sacrifice begets true, basic happiness.

I would give literally anything--a limb, a kidney, my life--to heal the soft, sweet, smiley boy who soaks my shoulders with baby drool every day. I would do anything anyone could ever think to ask of me to fix his little brain, and to keep all the kids safe and well, intact and loved and certain of their family. That is what I would do with my free will.

I am (still) floored that the person who is the other half of my beautiful baby boy's genetic make-up has chosen to use his free will to destroy everything his kids ever believed was good and safe and true. I do not understand how I can get no say in what happens to my baby's brain, but his father gets to choose to burn this family to the ground.

The kids are slowly decompressing, detoxing. The complaints and sleeplessness and tears should wrap up about the time they have to go back for another visit.

Thursday, June 22, 2006

They grew so much and seem like different kids, all in just two weeks. I am so happy they're here! I'm jumping up and down--see?! (I can't believe I survived the experience. I hate it desperately. Blech. Pppp-tooey.)

In other news...

Q had his ultrasound follow-up with the pediatrician on Monday. She's sending us on to a pediatric urologist. Maybe surgery, maybe not, it's hard to say at this point. In any case, no one discussed or noted their visual of something dark that looked maybe like bowel, maybe not, so I guess it's a non issue for now. Un/partially descended testicles and communicating, variable hydroceles are the issues. I've got to get the urologist and the genetecist and the vision therapy balls all rolling in the morning. It's a bit to track. Hopefully, in the big picture this is the stuff that will make a huge difference for little guy, even as it fills the short-term calendar and keeps us all on our toes, juggling madly.

He drooled all over his daddy at the airport today. The boy is teething. He wore a sweet little bib that says, "I Love Daddy" but still managed to drip and slobber his papa a good one. Q has become so slobbery that we walk around looking for drool puddles on the new laminate floor, trying to mop up before it can soak in and warp it.

The summer schedule is coming together. Tomorrow is the zoo with friends, our new piano lesson times have been scheduled for all four of the bigger kids starting next week. I'm still waiting to hear whether or not the kids will be traveling for visits, so VBS is still a maybe. I'm planning to get in the science and history that flew out the window when the kids were enrolled. I've also got to get S and K back on their fun little learning to read plans. We have two birthdays coming up, and stuff to plan for those. Family will be visiting from another state, hopefully we'll get some time at the beach in there somewhere. Q continues with his weekly therapy, which I forget every week until the day before. Perhaps I'm blocking the unpleasant portions of reality?

So there we are, I guess. It's supposed to get roasty toasty hot over the next several days, so we can pull out the swimsuits, stock up on popsicles, and drag out the sprinkler for play while also watering the lawn and gardens. Multitasking. Hurrah!

Did I mention that my kids are home?

Woo hooooooo!!

I'm taking stuff so my faucet, or nose, will let me sleep. Off I go then. Sleep well. Tomorrow morning, lavish love on the people around you, tell them it's from me. And my darling babies. They're home, you know.

Saturday, June 17, 2006

Thank God. Sometimes time, though flying by, doesn't move nearly fast enough. I want to get the kids back, deprogram them, and freeze frame on us all doing some nifty project at the table. Q nursing like the wee piglet of the bunch, S writing, asking, "What's an (insert letter here) look like?" K making her big old run-on sentences with, "How do you spell _____? How do you spell _____?" E writing the sweetest things about loving the sweetest mommy ever (couldn't you just eat her up?), and G drawing, reading, making rocket noises (at least he's progressed from dino sound effects).

My fingernails are a mess. Only a few more days, only a few more days.

Then a whole other effort must be embarked upon. Bringing them back to earth without breaking us all into little pieces.

Heavy sighs, rubbing tired eyes...

At least the Big Project, meant to be best use of time without kids, while also keeping me from going stark raving mad, has progressed. The carpet is out. By the end of the weekend, the laminate floor should be mostly laid through the "common areas" of the house. It would have been truly nearly impossible to have accomplished with the children here--I would have taken them to an auntie's house for several nights of sleeping over (all of us), to keep them out of the staples and yuck one finds under one's 26 year old carpet. Blech.

So there's that at least.

Al-ways look on the bright side of life...

How are you? Well, I hope. Steeped in family (the nice ones, anyway) and friends, immersed in loving and being loved, even in the daily-ness of things. May you sleep well, awake refreshed, and revel in a little (or a lot) of shared happiness this weekend.

Wednesday, June 14, 2006

I'm jiggling little guy on one knee, typing with one hand. Poor baby had shots today. He's almost forgiven me.

So I was just reading about hydroceles because Q had a scrotal ultrasound today. The tech ladies were discussing the visuals, or lack thereof, while looking for the fluid that kept moving around and away. They wondered aloud if that dark spot they saw was intestine, agreeing that whatever it was, it shouldn't have been there. I think, based on what I could see and what the pediatrician has noted previously, that his testicles have not descended. Of course, they will confirm or deny nothing beyond, yes, that is a testicle, or no, I can't see fluid there. Argh. It would seem that all this means surgery.

Aaaaaaaaa!!! Splat.

My reserves are low, I must admit. Last summer, a very nice, Christian, professional man told me that whatever happens, I must not allow myself to become so tired physically, emotionally or spiritually that I become a detriment to my kids. He's right, of course. And of course, it's harder to put into practice than it is to pronounce. Especially when the sludge just keeps coming. Dadgummit.

The big kids are off visiting for two weeks, back June 22, around noon. Yes, I'm counting the seconds. I'm having a hard time praying for their father. I'm still prostrate on my kids' behalf as I imagine I always will be. And I suppose by extension this means I pray for their daddy. It is just hard, hard, not to wish him ill. Violently and creatively so. Still, in the time it takes to formulate a thought in that direction, the emotion behind it evaporates. He was once a spectacular human being. My children need there to be grace in all this, somewhere. And here I am again, pushing down the bile, on my face for my babies...

Well, I believe we've now had all of the necessary tests to address each of Q's (major?) issues: neurological, ophthalmological, urological. Now it's just a matter of figuring out the timing of the procedures-- though wouldn't it be grand to turn out not to need them? I'll be back to post about the MRI and neurology chart notes after I've had a chance to research the terms a bit more.

Monday, June 12, 2006

Saturday, June 03, 2006

The little guy has fallen asleep nursing. One hand up, open, fingers splayed on my chest, the other down, fingers curled next to his cheek. His eyelashes fan on his butterball cheeks, thick and dark and so long. Just like his daddy.

This babe is so round. Laid on his tum, naked, he has a fat little bum. Not that you'd notice it otherwise, but naked it's impressive, as are the rolls on his thighs. I was noticing today that he might need to move from size 3 to 4 in diapers. He's not yet 5 months old and over 18 pounds. Oy, my back.

He's sucking his tongue in his sleep. His ears look like they need nibbling. Fat and pink and soft like warm August peaches. Yum. He smells nice, like things fresh from heaven should smell. Did you know that they arrive on the planet like that? It's true. I'd always thought their breath smelled sweet because of the milk, but mine have all had that "milk breath" when they were born.

My hands down favorite time is nursing. Not that the cooing, burbling, and laughing isn't just precious. It is; I well up thinking about his smiles and sounds. They make my heart sing. It's just that the business of filling the little belly is, well, primal, I suppose. And when he's so hungry to start with, convinced that no one would ever feed him again, when he's had a looong draught, is finally full and comes up for air, wobbly and milk-drunk... It completes a circle. I don't know how else to refer to it.

Friday, June 02, 2006

Sometime I should tell you about the tree that fell on the house. February 17, this year. We're "in line" for repairs now. Also, you would like to hear about homeschooling, wouldn't you? I knew it! Then there's the reason I named this blog "Dura Mater" and all the irony it now holds. How about the time my two oldest aerosolized peanut butter and I was certain that I was raising up sociopaths? What happens when you hit a deer and then a pickup full of crazy cussing people, pulling a full horse trailer hits you? Iknow. I should share that sometime.

Let's see, what else? How about getting rear-ended by a sweet young thing named Madonna? Her husband was Sean. No kidding.

The latest installment in our no rest for the weary play is that the pipe running from the water main to the house is leaking. Apparently, quite significantly. It's weird, isn't it? It seems like there should perhaps be, oh, a break in the insanity?

Speaking of which, I finally contacted the neurologist's office yesterday. Turns out the transcriptionist had gone on a two week vacation and nothing from the date of our office visit will be transcribed until maybe next week. Argh!! How am I supposed to get the ball rolling on this vision therapy thing? Are we new here on this planet? I need this paperwork to beat the insurance people into accepting a recommendation for referral.

Q's usual therapist was out sick today, so a different nice lady saw him. She worked much more quickly with him, I think pushing him a little further than he was comfortable with (not a bad thing, in itself). He was tired out by the time we were half an hour into the 50 minute appointment. I sat down to nurse the squawky little man and the OT came in for her consult. We talked about his over-pronating with closed fists, his pinky that "cliffs," his double jointed thumb that is tight in a whole different way, and how to work the whole hand so it doesn't compromise the integrity of his finger joints or the curve of his palm. She used the big words. I like her. Not just for that, she's compassionate and knows her stuff and was funny too, but it's so much easier for me if the "technical" terms are used--they are consistent, unlike most explanations offered a parent by certain professional people. Now that I think about it, the CTU folks are probably far likelier to use the big words because they are engaged in handling chronic conditions with long-term therapy in order to acheive the best outcome for their patients. They are almost certainly painfully aware that most parents come into this stuff without much previous knowledge, but volunteer to put themselves on a very sharp learning curve.

Anyway, the OT will get the pre-authorization stuff rolling and then Q will have molds done and will get these soft little cork and neoprene numbers for using while he pushes up from his tum, and two pair of neoprene mitts for daytime wear. They are soft enough to not keep him from sucking his thumb (which is therapy in itself), but firm enough to continually suggest to his thumbs that they would be far happier out away from his fingers.

The reason this is such a big deal now is that if left to develop on it's own, excess tone will start to freeze up the fascia and then the muscle and tendons become tighter and tighter until perhaps one is dealing with something like contractures. We will not be doing that, thank you very much. Hence, all the great stuff from the OT has me jumping up and down. I like to have something to do. Also, it occurred to me today that I know a hand OT who I'm pretty sure would be happy to lend me a little perspective and advice. Can you believe it? Here Q is doing hand issues first, before any others that need addressing, and I know a hand OT! Miracles, miracles everywhere and I didn't even have to argue with Miracle Max or swallow an enormous chocolate coated pill or come back from the dead! (If you haven't seen The Princess Bride, you should.) Ahhh.

It's all good. Or it will be. :o)

I hope you have a peaceful weekend and that all the water at your house is right where it should be, on an individual basis, of course. Think of us, will you?

It will stop intermittently through the beginning of July in order to allow us to revel in the emerald green-ness of the landscape and marvel that the surroundings are so spectacular. We will see the awesome mountains often enough to remember they are there and plan hikes accordingly. The third of July will be lovely. The fourth of July will be overcast, with light sprinkles. The fifth of July will be lovely. And summer will last through mid-October.

Welcome to the Northwest.

I heard today that Alexandrium dinoflagellates have been found at levels 1000 times what they ought to be not far from here. Red tide's rising. Guess who researched and wrote up a project of Alexandrium in his senior marine biology summer? It was an interesting paper.

Sigh.

At least the wet pattering on the roof and dripping of the eaves makes for a nice June lullaby.

First time here?

Me

I'm mothering five gorgeous, perfect children, and homeschooling three of them. I am one of the best-blessed mamas in the universe. Oh and -- there's the small matter of neuro issues here. I suspect that somehow the littlest one's Special Needs behave as some sort of condenser that delivers unusual configurations of Rainbows, Butterflies and Bliss, right in the midst of the ubiquitous and itinerant crazy bits. So we have some stories to tell.